It’s Not Over Yet…

Tonight I needed a glass (or two) of wine, some time alone in my office, and plenty of music.

And as the lyrics roll through my head in the eclectic mess that spans, Contemporary Christian, Classic Rock, and some alternative memories from back in the day, I somehow start to find myself again.

I am generally a very positive person. I am able to find blessings in unlikely and hard to reach places. I make a point of focusing on these things for so many reasons. Primarily, I find it is necessary to be positive for my health. While I don’t believe a positive attitude alone will cure illness, I do firmly believe a negative one, or a constant state of stress and worry can worsen illness. We certainly don’t need that.

But, lately I’ve been frustrated. I’m even a little angry. You see – everything is NOT fine.

And I’ve been avoiding my computer because I’d rather write when my perspective is in its proper place. One of the reasons I love to blog is because I can get right in my head by the time I’m done. I can typically work through whatever is gnawing at me.

In our house the diagnoses came about five and a half years ago. I was 38 and Meghan was 8.

In most of the people I’ve interfaced with who have Cowden’s Syndrome, their diagnosis is less than 10 years old. I know there are others, but this is the majority.

There is a growing group of us who are parents. Now, in my case, my diagnosis was made BECAUSE of Meghan’s. But, in many cases the opposite is true. There comes a point where the signs are either apparent, or subtle, and something prompts the formal diagnosis of PTEN Hamartoma Tumor Syndrome, in some form, in our children.

Anecdotally, we are not the only house where the syndrome seems to manifest worse a generation down. This is a story I have heard many times.

There is a special kind of knot that forms in your stomach and lingers, forever, when you realize that you are somehow responsible, in an unintentional, yet undeniable way. Your child has this syndrome because, even with a current estimate of a 1 in 200,000 diagnosis it is an autosomal dominant condition, which means that if you have the mutated PTEN gene, 50% of the time, it will pass to your child.

Between us, since Meghan was born in 2003 there have been 30 or more trips to an operating room. On 18 of those visits I have watched my girl head into surgery.

And I know all the blessings bestowed upon us. I know the beauty of benign biopsies, and the gratitude of legs that allow for walking when the alternative has certainly been possible. I know the strength and resilience of my daughter, and the grace of God alone. I know the grit of a child just out of her 7th knee surgery who understands the recovery process better than any PA she will meet in the surgeon’s office. I know the feeling of bruises on my knees as I give thanks for my child who is ABLE to recover. I get it. I truly do. I’m grateful. I am.

But, you know what else? Sometimes I get angry. And, that’s OK too.

I’m learning that part of being able to be positive is allowing myself to FEEL and WORK THROUGH ALL the emotions that come my way. Even the ones that hurt. Even the ugly ones that don’t have flowers and rainbows attached.

This is reality. This is our reality. And I am not about comparisons. I do not profess to understand anyone else’s reality any more than I could expect them to understand mine. I do not use words like “worse” or “better” or “harder” or “easier” or “fair” or “unfair.”

What I can tell you about our reality is that 18 is too many surgeries for a 13-year-old girl.

I can also tell you there will be more. For both of us.

Vigilance, a necessary reality to keep us in front of the astronomical cancer risks associated with Cowden’s Syndrome will lead to more surgery. And we will hope and pray each is followed by a benign biopsy, or an encouraging word from an orthopedic surgeon trying to preserve a knee damaged by a mischievous AVM.

When I got my diagnosis, I was almost 40. I was married. I had a little girl. I had a home. A career.

When my girl received her diagnosis she was in 3rd grade.

Swallow that.

It doesn’t taste very good.

Cowden’s Syndrome is isolating. In addition to numerous food issues, and immunological issues, and significant knee trouble (understatement of the year,) there are SO MANY doctor’s appointments. There are countless blood draws. There are so many days I pick her up at school and we do ANOTHER 4-5 hours round trip in the car, traveling to NYC, sitting in traffic, parking, waiting, sitting in more traffic…

As connected as social media can help you be, there is a lack of connectedness that is inherent with not being there. Being absent. Being unable to go on certain trips. Being unable to do the things kids your age can do…

When I was a child I always “knew” something was wrong with the ridiculous number of surgeries I had, but it was different. It was not the same as knowing for sure that your genetic mutation was going to guide portions of your life whether you like it or not.

When you have one thing wrong, whether you break an arm, or have your wisdom teeth out, or your tonsils, people seem to know what to say. When you constantly have something wrong, some type of surgery, or some type of recovery on the agenda, it gets harder for everyone.

People don’t know what to say. So they don’t…

Cowden’s Syndrome can be very isolating.

What about our children? What about our children who are being diagnosed younger and younger? To some extent, yes, “Knowledge is Power,” but at what cost?

We are forced to make the logical choice for necessary screening appointments, and often surgery, while often having to skip social, cultural, or sporting events.

We are forced to say no to social engagements so often, that people forget to keep asking.

Our youngest children at diagnosis may not fully understand the scope of what is now their’s. But, they will. If they have a parent with the same syndrome they will watch. Everything. If they are the first in the family they will piece it together. Really there comes a point there is no keeping it from them. Then what?

I am blessed with a young lady who reads like a book-worm, and has a solid comprehension of people, personalities, and her environment. I am left only with the option to tell her the truth.

Sometimes the truth gets stuck in your throat, burns a bit, or leaves some nasty reflux. Yet, still that bitter pill is the only one we’ve got.

I sometimes wonder how different things could have been, if…

But it is my girl who stops me. Without this diagnosis she knows I would not be here. My breast cancer was uncovered by her diagnosis and that diagnosis undoubtedly saved my life. Without Cowden’s Syndrome she knows she would have become someone different. Someone else. And that wouldn’t have been right.

While I don’t believe in a God who wants us to suffer, I believe in one who uses that suffering to allow us to become a better version of ourselves.

My girl started Junior High with a broken foot. During her 3 years there she endured less than perfect social relationships (read, a few very mean children and my child who didn’t always have the patience to contend with teenage normalcy) and 7 surgeries. SEVEN. Seven recoveries, and pre and post operative visits too. She did that while holding an average of well over 95% every single marking period. She did that while making enormous strides as a competitive swimmer. She did that while learning that she had a the voice of a singer hiding inside. She did that while performing in several productions, practicing after school for months each year. She did that while spearheading 3 successful PTEN Fundraisers, essentially putting Cowden’s Syndrome in the vocabulary of our community. She’s ending Junior High on crutches. Unfortunate bookends, or a reminder of the strength and resilience of a young lady who refuses to be defined by her disease.

I am sometimes not even sure if she is aware of her accomplishments, as she is so busy pushing onward to stop and notice.

Who sets the example here?

I guess I need to stop hiding from my computer. Perspective never really leaves. Sometimes it just needs to be worked through.

This diagnosis stinks. This syndrome is a real bear to contend with. It is lonely and isolating and leaves little time to even see family, let alone friends. However, as the saying goes –

And that is probably the real perspective.

And almost as if perfectly timed, I found my title for this blog – as the Pandora radio plays..

“They are inside your head You got a voice that says You won’t get past this one You won’t win your freedom

It’s like a constant war And you want to settle that score But you’re bruised and beaten And you feel defeated

This goes out to the heaviest heart

Oh, to everyone who’s hit their limitIt’s not over yetIt’s not over yetAnd even when you think you’re finishedIt’s not over yetIt’s not over yetKeep on fightingOut of the darkInto the lightIt’s not overHope is risingNever give inNever give upIt’s not over…”

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7 thoughts on “It’s Not Over Yet…”

Wow, was that well said. I am sobbing. For you? For Meghan? For us? I don’t know…all of us I guess. Isolating is sure the truth and you can’t even blame people when it happens because it’s just too hard. And when it’s your kid who’s getting isolated, you surely cannot blame the other kids either. You just tuck it into your head as yet another consequence of this thing and do your best to compensate for the losses as best you can. Hang in there my friend. Remember, above all else, that this thing, as awful as it is, is almost always “manageable”. As much as that sucks, it’s that phrase that usually keeps me from going off the deep end of worry…….

My first, and some of my most valuable lessons have come from you- a far away friend I’ve never met. Vigilance was one of the words you taught me. I live it well- and it is a blessing and a curse. Thank you for being a role model for the rest of us moms as we figure it out!

Lori, you always seem to put EVERYTHING in perspective..and included in all the things I am grateful for are friends like you and Meghan and all those among us who continue to fight that uphill battle every day..hoping to gain even just the smallest edge! XOXOXOXOXOXOXO

Hoping for more peaceful joyful pain free moments then not. For all of you. We are just coming to grips at age 23 with the reality of it all. But yes they do teach us!! Keep fighting. Find your strength. Enjoy the love of your family friends and community. Hope to see you soon.